The following testimony is a very relatable story, in which Canadian Raelan, who suffered from CFS for years, tells about her journey to becoming pain-free.   The video is in English, the translation can be found below.  

Raelan and CFS: choosing life

My grandmother emigrated from Ukraine to Canada and it was particularly hard for her to raise her children. She often felt guilty and my grandfather was rather distant, both in the household and towards his daughters; he mainly focused on the sons.  My grandmother got CFS.  My mother had a difficult childhood but had a ray of hope; she had a close bond with one of her siblings, but they suddenly died at the age of eleven from an aneurysm. Around her thirtieth, my mother also developed CFS. I was five years old at the time.

My mother initially worked full-time, visited countless doctors and tried everything: moving more, taking more rest, hearing that it was “all in her head”. The harder she tried, the harder it became. Eventually, she had to stop working. Her life became increasingly smaller, she became house- and bedbound, moving only by wheelchair. The depressive feelings increased and after twenty-five years of CFS she lost all hope. She committed suicide.

My mother was a strong, but also selfish woman on healthy days. Even when she became ill, she continued to set high expectations. She expected others to help her immediately. I was her only child and grew up with constant stress.  She was very anxious about everything I went through. A simple flu led to panicked texts from her: “this flu could be fatal”.  Otherwise, everything revolved around her. She became jealous when my father received attention and family parties were always fraught with stress. My mother threatened suicide if I did not do what she asked quickly enough or long enough or well enough. Both my father and I lived in survival mode. My own needs and feelings were not allowed to exist. I learned at a young age to put them aside, and I continued to do so when I left home.

I made up my mind: I will never get CFS. I am different from my mother. I just kept going: multiple jobs at the same time, studying, a busy social life, traveling, obtaining a master's degree. Self-care amounted to obsessively watching my diet and weight and extreme exercise. My self-esteem depended on how my body looked. I just kept running, even on trips in Europe, where I traveled with to-do lists to see and do as much as possible. Even that which was supposed to bring pleasure turned into stress.

And then my body gave out.

Eight months after my mother's death, I myself received the diagnosis of CFS. I came back sick from a trip and could not get out of bed. At first I thought: “it's just the flu.” But the symptoms persisted and worsened. Eventually, I could not finish my master's program in social work and could no longer work because my GP would not write me a sick note.  I felt lost.  If the GP in Canada says there is nothing wrong with you, the social insurance system does not come into play.  I had to look for private treatments.  Through expensive private doctors I received all kinds of diagnoses: CFS, Lyme, adrenal fatigue. I followed a strict treatment plan and spent thousands of dollars every month on supplements and doctors, but nothing helped.

After a few years my marriage ran aground. I retreated to my father's, who was depressed, in the room that once belonged to my mother. I kept searching: visited specialists, researched alternative medicine, read books about cancer and diabetes, chronic illnesses, I bought an infrared sauna, a mini trampoline,.... Hope and despair alternated. Eventually, I hit a deep low: I was 32, depressed, isolated, even suicidal.

With a little money from the sale of my house I thought: maybe I can travel, even if it is  just to lie in a different bed for a while. And somewhere, despite the pain and hopelessness, a spark flickered: I am free, I owe nothing to anyone, I can choose. I want joy, adventure. I want to discover if that is still possible.

That turned out to be a turning point. In Thailand I rented a hotel room for six months. I was still careful, sparing with my energy, but also free: what do I want to eat, where do I want to go? For the first time I felt that my childhood had been taken away from me, because I had always been at my mother's service. Now I could choose for myself. I was like a child in a candy store!  I told no one that I had CFS.  That didn't have to be done, I had a conversation with people for a few hours and then went to the hotel. I stood barefoot in the sea  from the movie The Beach, looked at Leonardo DiCaprio's beach and cried – with happiness. I still had CFS, but there was also pleasure in my life. My symptoms became more bearable, precisely because I stopped fixating on a cure.

I learned that joy is a basic need. If that is missing, you get sick. And sometimes it is your body that forces you to step off the treadmill.

In the years that followed I backpacked, did temporary jobs, made friends. Every day I still had symptoms, but I could juggle with them. It was no longer a torture. My boyfriend at the time, now my husband, suggested living together and taking time to really recover. I delved into the importance of sunlight, sleep rhythm, nutrition, fasting, cold water therapy, massages....  But the real change did not come from my body, but from my mind.

Because during my travels I had noticed that when I liked something, I could physically sustain that activity longer. 

I started doing small exercise programs, e.g. 1 week moving the arms for 1 minute, the next week 2 min, then 3 min, etc. After a year I trained in the fitness center.  Then I thought I was making my body stronger, now I know that I was gradually programming my brain; I gathered evidence that I could move after all.   I often still felt 'something' in my body after such a training but idid not panic anymore at symptoms.  And then I could suddenly do all activities.  I had also started journaling, making lists about big T and little t traumas and received psychological guidance.   I realized that the body-focused things were not the solution but the mind-focused ones. 

I thought about what things kept popping up in my head, e.g. being bullied as a child, especially the things that revolved around shame.  I wrote these things out.  Why do I feel this way, what caused this?  If I go back to that moment, what would I say to myself then?  And so I processed every situation that occasionally popped up in my head. 

Today I no longer have chronic symptoms. Sometimes lower back pain pops up with stress, strange because I didn't have that before, but I recognize it and let it go. Symptoms are now signals with which my body communicates: look, here is stress. And I listen and calm my body: Yes, I know, thank you for letting me know, that is about that.  And the pain disappears.

My message to other people with a chronic illness: 

I know that when you go through such a process, that it can feel like nothing is going to change, that it is forever, that you are the only person for whom the mindset change around pain cannot be applied. Or you think that you have had it for too long. Or your symptoms are too serious.   Or maybe you are still holding on to the thought: but I really have something (which by the way is the case for everyone).  There is no one who is too sick or too deep or whatever not to be able to recover. You do not have to constantly laugh or pretend that nothing is wrong.  But keep looking for a solution, maybe it is not this video but another video, or a certain book or a podcast that gives you THAT what you need.

Source: ATNS